Celebrating a life well-lived — one year later

“The goal is not a good death. The goal is a good life — all the way to the very end.”

— Atul Gawande, M.D., surgeon, writer and public health leader

By rclark

One year ago on this date, July 11, 2019, my wife, Norma, was freed from the prison of Alzheimer’s disease. So exactly one year later it is appropriate to celebrate Norma Houghton’s life and share with my readers personal reflections on my recovery.

You who have been with me all the way from diagnosis in 2010 to last summers’ final breath know the documented story of a lady who gave an extraordinary gift to sacrifice her privacy to help others. The sadness in over 10 years of seeing her drift away was softened by the concern of many readers, as well as numerous caregivers.

My restoration and renewal following our 57 years of marriage has been facilitated in part by periodic messages this past year from her hospice caregivers from Compassus. A healing journey of recurring memories was predicted by their periodic communication.

Norma’s good works have been recognized with the Norma A. Houghton Staff Award in the Birthing Center of Monadnock Community Hospital and an annual scholarship for a graduating student from one of our three local high schools choosing higher education in nursing.

As past co-chair of the Western New Hampshire Walk to End Alzheimer’s, I have been given the satisfying task of using my wife’s story as a monthly “mission moment” to cheer on the current walk committee through the challenges of planning a major event during the pandemic.

So her legacy lives on and, though grief has come to my life, spiritual growth and a new life have also emerged as predicted and aided by Compassus. I can now see that hospice is not about dying but helping caregivers and patients live life to the fullest.

When our time on Earth comes near a close, the choice of hospice provides a better quality of life than if aggressive end-of-life medical care were applied. Dr. Gawande’s classic treatise, “Being Mortal,” about “medicine and what matters in the end,” is on point.

You may remember an early column about full body donation for medical education. I expect next week to travel to Boston University Medical School to bring Norma’s ashes back to Jaffrey. Plans are being laid at the United Church to develop a memorial garden as a final resting place for beloved members of the church.

If you want to find out more about hospice services, visit the hospice and palliative care organization (www.nhpco.org). It is not true that hospice is only for the final days or hours of life. Hospice is about helping patients and their families have the best possible quality of life as they can when life expectancy is limited.

Usually a patient’s doctor and the hospice medical director work together to offer experience with hospice criteria, guidelines and clinical judgements. Hospice Medicare coverage includes nurses, other caregivers, medicines, supplies and equipment, with little or no cost to patients, families or caregivers.

Clearly for me hospice care provided even more than medical, emotional, social and spiritual support. I find myself surrounded with family and friends who share my loving memories of Norma and continue to offer peace and support as I come to this special date.

Compassus gave me positive relief and strength during a time of extended grief, allowing me to create appropriate remembrances and lasting reminders of a life well lived. Since they suggested a celebration on the anniversary of my loved one’s death, isn’t it a joy that my July column is published as a tribute on this very date!

“Enjoy life. Have fun. Be kind. Have worth. Have friends. Be honest.

“Laugh. Die with dignity. Make the most of it. It’s all we’ve got!”

— Ricky Gervais

Complete Article HERE!

Do Animals Truly Grieve When Other Animals Die?

By Denyse O’Leary
Anthropologist Barbara J. King, author of How Animals Grieve (2014), has written a thought-provoking essay on the difficulties that COVID-19 has created for people coping with the death of a loved one because they are not allowed conventional grieving methods. Although it is titled “Animal Grief Shows We Aren’t Meant to Die Alone,” King’s essay turns out to be appropriately skeptical of ambitious claims about animal grief. She writes,

There is a popular perception that some animals, particularly elephants and crows, participate in their own kinds of funerals. But there’s little solid evidence—at least, so far—for this kind of community ritual. Elephants may occasionally cover a dead companion’s body with leaves or branches, but the meaning and intent of this action remains unclear. A 2012 paper includes the words “scrub-jay funerals” in the title, but the “funerals” were actually noisy gatherings of birds around scrub-jay skins and feathers laid out by researchers in an experiment. The birds’ response to what they saw indicates acute social assessment of their surroundings, to be sure, but it’s a stretch to consider that behavior a death ritual.

Barbara J. King, “Animal Grief Shows We Aren’t Meant to Die Alone” at Sapiens (April 22, 2020)

That said, she cites a number of instances of animals showing apparent grief at the death of a companion:

At the Farm Sanctuary in New York state, after years of close companionship, a duck named Harper withdrew socially and refused to form new bonds after the death of his duck friend Kohl in 2010.

Barbara J. King, “Animal Grief Shows We Aren’t Meant to Die Alone” at Sapiens (April 22, 2020)

But wait; it’s hard for a human to be sure what’s happening here. Harper may simply have lost the ability to form close bonds with other ducks, irrespective of what, if anything, he understands about Kohl’s absence. Again, while much is made of primates grieving over dead companions,

Monkeys and apes don’t act exactly as humans do around dead bodies. Mixed in with compassionate caretaking may be aggressive or even sexual behaviors: They might strike or mount a corpse. Yet human grief, too, can manifest in unusual ways. At a solemn memorial service, a mourner may suddenly laugh in involuntary response to tension.

Barbara J. King, “Animal Grief Shows We Aren’t Meant to Die Alone” at Sapiens (April 22, 2020)

Well, we are beginning to get a clue now. A human being may behave oddly at a funeral but that is because of an awareness of what death means. The monkey is troubled by death but does the monkey understand what death is? Anthropologists like King resist making that distinction:

For much of the 20th century, it was common practice for ethologists to resist acknowledging the profound emotions expressed by these animals. Anthropologists and zoologists who broke with tradition to describe animal grief—and other emotions as well, including joy—found themselves accused of anthropomorphism, the projecting of human capacities onto other species. The tide began to turn, however, as ever-more research in the field and in captivity showed unmistakable evidence of animals feeling deeply what happens to them. More than ever before, researchers now recognize that grief and love don’t belong only to us humans.

Barbara J. King, “Animal Grief Shows We Aren’t Meant to Die Alone” at Sapiens (April 22, 2020)

No, love and grief don’t belong only to us humans. But there is something that does. Consider the story of Hachikō, the Akita dog (right, in 1934) whose human friend, a professor named Hidesaburō Ueno, died of a cerebral hemorrhage while on a train trip in Japan in 1925 and never returned to the station from which Hachikō had seen him go:

Hachiko moved in with a former gardener of the Ueno family. But throughout the rest of his ten-year-long life, he kept going to the Shibuya Train Station every morning and afternoon precisely when the train was due to enter the station. He sat there for hours, patiently waiting in vain for the return of his beloved owner which sadly never came back.

Maria Wulff Hauglann, “The Amazing And True Story Of Hachiko The Dog” at Nerd Nomads

Hachikō has inspired much devotion ever since, along with several films and monuments.

The touching part of the story is not simply Hachikō’s devotion but the fact that the dog could not know that his beloved Hidesaburō had died.

Death, after all, is an abstraction. We can be told that someone has died and, without seeing the person’s body, we know what that means. We also know that all human beings (and all animals) will die sometime. But that is an abstraction too. For humans, mourning is a philosophical as well as an emotional affair. As a result, death raises questions about the meaning of life which Harper, the monkeys, and Hachiko could never ask.

It is these thoughts and questions, not only grief, that have always underlain funerals:

What’s undeniable is that our early Homo sapiens ancestors began to create increasingly elaborate burial rituals. At around 24,000 years ago in what is today Sunghir, Russia, for example, a boy of about 12 years of Animals ranging from elephants to cows, ducks to dogs, may grieve.age and a girl of about 9 were buried together. The research paper describing the remains says they were “head to head, covered by red ocher, and ornamented with extraordinarily rich grave goods.”

Barbara J. King, “Animal Grief Shows We Aren’t Meant to Die Alone” at Sapiens (April 22, 2020)

But then those human beings knew what it meant in the abstract to say that the children had died. The grave goods they provided suggest that the mourners thought the children might need something somewhere. But they surely understand that somewhere to be another dimension of reality. That’s part of what the animal doesn’t have.

So do animals grieve? Yes indeed. Do they grieve the same way humans do? No, because, for better or worse, they can’t. There is no turning back from the gift of reason.

Complete Article HERE!

BIPOC in Death Care

The voices of Black, Indigenous, and People of Color (BIPOC) need to be amplified so we are going to use our newsletter and social media platforms to aid in their sharing. Here are a few resources for us to explore racism, privilege, and bias in death care:

Sayin It Louder: A Conversation About “A Good Death” in a Racist Society.

A conversation among death care professionals Alua Arthur of Going with Grace, Lashanna Williams of A Sacred Passing, Joél Simone Anthony of The Grave Woman, Alicia Forneret, Oceana Sawyer, and Naomi Edmondson.

 

Watch the recording of their discussion by clicking here.

5 Crucial Things A Grieving Partner Needs You To Know

by Susan Johnston

We all process grief differently.

When my dad died, it was hard on me, of course, but also on my boyfriend.

The call came just a few weeks shy of our one-year anniversary. Suddenly, he found himself sitting next to me in the front row of the church and meeting my extended family.

He handled it with sensitivity and maturity, and the experience has brought us even closer.

I’ve had boyfriends in the past who weren’t the consoling kind (“I’ve never heard of Shy-Drager Syndrome — how bad could that be? Are you sure your dad has that?”), so I considered myself lucky to have a boyfriend who could watch me break down in tears and hold me sympathetically without making inappropriate comments or breaking down himself.

In a cruel twist of fate, I got a taste of the other side when a doctor diagnosed his mother with cancer less than a year after I lost my dad.

Being the shoulder is a lot harder than he made it look. There’s not much you can say that will make things better, though you’re tempted to try.

Both of us experienced anticipatory grief (me knowing my dad would never dance at my wedding or hold his grandchildren, him wondering when and how his mother might go).

But we expressed these sentiments differently. I needed to talk or cry at inopportune moments. He approached it from a more practical, scientific perspective.

According to Roberta Temes, a psychotherapist who specializes in grief counseling and the author of Solace: Finding Your way Through Grief and Learning to Live Again, this gender difference is pretty typical.

“Women will talk to girlfriends more,” Temes says. “The community of women is accustomed to talking. The community of men is accustomed to getting on with it.”

So, what do you say to your significant other when they lose (or know they could lose) a close friend or relative? And how do you help them regain their footing after the passing?

Everyone experiences grief differently, but here’s how to support your partner through grief by keeping a few things in mind.

1. Sometimes silence really is golden.

According to Temes, one of the worst things you can say is, “I know just how you feel.” As Temes explains, “Each heartache and heartbreak is unique; you really don’t know any but your own.”

Even if you’ve lost someone you love, you probably don’t know exactly what the loss means to them or how they will process it, so don’t assume that you do.

When in doubt, simply offering a hug and a willing ear can show that you’re there for the person. You don’t always have to say something comforting. 

2. Sometimes we need to talk, even if we’re just repeating ourselves.

“If it’s the beginning of mourning, they need to be left alone,” says Temes. “If a few weeks or months have passed, then they need to talk about the relationship. It is important for them to talk, often repeating the same stories. The more they speak of the moment of death, the sooner it becomes a reality to them.”

Temes suggests asking questions like these to open up the conversation: “How are you doing — is it difficult to sleep? Are you able to get back to work yet? Some people find it difficult to eat when they are mourning. Would you like to come over for dinner one night next week?”

3. Even if you didn’t know the person who died, we need you there.

Whether your partner just lost someone they care about or anticipates losing them, they need your support.

If you’re with someone whose parent is dying, and they ask you to go with them and visit that person, don’t say “no,” “let me think about it,” or “that’s too much of a commitment.” You’re there for your partner, not their relative.

If you don’t care about them enough to say yes, then a serious relationship isn’t for you.

My boyfriend felt a little out-of-place sitting with my immediate family at the funeral when he’d only met my dad twice. But my brother appreciated having him there so he could focus on comforting my mother, and I appreciated him making the effort, too.

4. Healing rituals can help.

“Rituals are terrific,” Temes says. “All religions have rituals. If you’re not religious, it’s still a great idea to establish a ritual, which can range from setting aside a particular time to go through a photo album to lighting a candle and saying your memories.”

5. Grief doesn’t follow deadlines.

“It is a long process,” according to Temes. “Those who are grieving will get back to themselves when they are ready, not when you invite them to a party or demand they pull themselves together.”

A month after my dad died, I thought I was feeling like myself again.

Then I saw a family huddled around their luggage at an airport, and it reminded me of all those vacations my dad loved to plan and how we’d never get to travel with him again. Or, I’d see an older man in a wheelchair and get a flashback to my dad’s last few months.

Grief can come in waves, but as time passes, mine has become more muted and less frequent.

While everyone’s healing process is different, Temes says that if a month or two as passed and your significant other cannot eat, sleep or function at work, or if they become obsessed with the deceased person, it’s time to get concerned.

She suggests you, “tell your partner you are worried about them and so you made an appointment with someone who knows more about bereavement than either of you.”

Complete Article HERE!

‘I Couldn’t Let Her Be Alone’

– A Peaceful Death Amid the COVID Scourge

Patti Breed-Rabitoy had coped with lung and kidney disease for years but remained a vital, bubbly presence in the lives of her husband, Dan Rabitoy, and three grown children.

By JoNel Aleccia

As her mother lay dying in a Southern California hospital in early May, Elishia Breed was home in Oregon, 800 miles away, separated not only by the distance, but also by the cruelty of the coronavirus.

Because of the pandemic, it wasn’t safe to visit her mom, Patti Breed-Rabitoy, who had entered a hospital alone, days earlier, with a high fever and other symptoms that were confirmed to be caused by COVID-19.

Breed-Rabitoy, 69, had suffered from lung and kidney disease for years but remained a vital, bubbly presence in the lives of her husband, Dan Rabitoy, and three grown children. She was a longtime church deacon and youth leader in Reseda, California, a fan of garage sales, bingo games and antique dolls. Then came COVID-19, likely contracted in late April following one of her thrice-weekly dialysis sessions. Now she lay sedated and on a ventilator, her life ebbing, with no family by her side.

“I had seen these things on TV and I would pray for those people and say, ‘I can’t imagine what they’re going through,’” said Breed, 44. “And now I was living it.”

A single mom of two young sons, she was wrenched with guilt at not being with her mother. “You always picture you’re going to be right by your parent’s side,” she said.

Unlike many families of dying COVID patients, Breed and her family were able to find some comfort in her mother’s final hours because of the 3 Wishes Project, a UCLA Health end-of-life program repurposed to meet the demands of the coronavirus crisis. In the U.S., where more than 120,000 people have died of COVID, it’s part of a wider push for palliative care during the pandemic.

At 5 p.m. on May 10, Mother’s Day, before Breed-Rabitoy’s life support was removed, more than a dozen family members from multiple cities and states gathered on a Zoom call to say goodbye. John Denver’s “Rocky Mountain High,” one of her soft-rock ’70s favorites, played on speakers. Online, a chaplain prayed.

Breed-Rabitoy had been deeply sedated for more than a week, since a terrible night when she struggled to breathe and asked doctors to place her on the ventilator. Confusion abounded, Breed said. Could her mom still hear in that state? Two nights in a row, Breed asked nurses to prop a phone near her mom’s ear.

“I prayed with her. I sang her favorite songs. I read her the Bible,” she said.

Finally, a nurse gently explained that her mother was too sick to recover. If they removed the ventilator, it would be to allow her to die.

That’s when hospital staffers described the 3 Wishes program and asked whether the family had any personal requests for her last moments. They decided on the music and the family Zoom call. Dan Rabitoy requested that a nurse hold his wife’s hand as she died.

After it was over, family members received keychains stamped with her fingerprint and a copy of the electrocardiogram of the last beats of her heart.

“I’m grateful to have these keepsakes,” Breed said. “All these things have been healing.”

The project was developed in Canada but co-launched at UCLA Health in 2017 by Dr. Thanh Neville, an intensive care physician who serves as 3 Wishes’ medical director. It aims to make the end of life more dignified and personalized by fulfilling small requests for dying patients and their families in the ICU.

Before COVID-19, the program had granted nearly 1,600 wishes for more than 450 patients, nearly all in person. The deathbed scenarios have varied, from music and aromatherapy at the bedside to meeting a patient’s request for one last mai tai cocktail.

“We’ve done weddings and mariachi bands and opera singers and 20 to 30 family members who could come in and celebrate,” said Neville, 41. “And none of this is possible anymore.”

COVID-19 has “changed everything,” said Neville, a researcher who focuses on improving ICU care for the dying. Also a clinician, she spent weeks this spring tending to seriously ill COVID patients. Since March, her hospital system has seen more than two dozen COVID deaths.

In the beginning, visitors were strictly prohibited. Now, some may come — but many don’t.

“I would still say the majority of COVID patients die without families at their bedside,” Neville said. “There are a lot of reasons why they can’t come in. Some are sick or old or they have small kids. A lot of people don’t want to take that risk and bring it home.”

It has been hard to keep 3 Wishes going during a time when in-person memorials and celebrations are banned and infection control remains the primary focus. Neville even had to change the way the fingerprint keychains were made. Now, they’re treated with germicidal irradiation, the same method that lets health care workers reuse N95 masks.

The 3 Wishes Project is offered when death is imminent: Patients are enrolled after a decision has been made to withdraw life-sustaining technology or if the chance of death is greater than 95%. The program was created to help patients, caregivers and clinicians navigate the dying process in a less clinical, more humane way. Wishes needn’t be limited to three, and they can be articulated by patients, family members or hospital staffers.

The program is based on palliative care tenets that focus on the humanity of the patient amid intensive medical care, said Dr. Rodney Tucker, president of the American Academy of Hospice and Palliative Medicine. Seemingly small acts that honor an individual life help counter the efficiency-driven environment of the ICU, which can be dehumanizing. They’re at the core of care that has been shown to ease both angst for the dying and grief for those who loved them. “It helps the family that’s left behind cope more successfully with the loss,” he said.

Such efforts also remind providers of the humanity of their practice, which can help them cope with the stress of witnessing death daily, especially during something as extraordinary as a pandemic, he said.

A study published by Neville and colleagues last year found that 3 Wishes is a “transferrable, affordable, sustainable program” that benefits patients, families, clinicians and their institutions. They calculated that the mean cost of a single wish, funded by grants and donations, was $5.19.

Genevieve Arriola, 36, has been a critical care nurse for eight years. When the pandemic struck, she found herself juggling medical care and emotional support more than ever. She took care of Breed-Rabitoy for three days straight, all the while communicating with the dying woman’s family.

“This was a very delicate situation for someone who is married to her for over 20 years and a daughter who was miles away in Oregon and couldn’t see her mom,” she said.

She was also the nurse who held Breed-Rabitoy’s hand as she died.

“I pretty much felt honored to be that person,” Arriola said. “I couldn’t let her be alone. If no one can be there, I can.”

Weeks after her mother’s death, Breed is grappling with the loss. The last time she saw her mom was March 16, at a McDonald’s off Interstate 5 near Grants Pass, Oregon.

The pair met for less than 30 minutes before Breed-Rabitoy headed south down the interstate, her long-planned family visit cut short by concerns about COVID. She had just learned that the local dialysis center was closed to outside patients, and she was worried about growing reports of infection and death. “She told me, ‘I feel like this disease is coming after me,’” Breed recalled.

Now, the keepsakes from 3 Wishes are placed where Breed can see them every day.

“It added such a level of love and dignity we weren’t expecting,” she said. “It made the process of losing a loved one to COVID-19 so much more bearable.”

Complete Article HERE!

When ‘content’ means choosing the day you die

Lynn Kennedy Ottawa in apartment on Wednesday Feb 5, 2020.

By Kelly Egan

One day last week, Lynn Kennedy finally got the medical news that would end her chronic pain and stop the many-sided suffering she has endured for nearly 10 years.

Doctors agreed to help her die.

Kennedy, 58, had been trying for months to have a medically assisted death and went public with her wishes in February to draw attention to a major barrier in Canada’s regulations.

Applicants could only be approved if their death was “reasonably foreseeable” and, at the time, hers was not, leaving her to cope with years, possibly decades, of declining physical and mental health.

“I’m not me anymore,” was the devastating way she expressed her station in life.

Kennedy, a former administrator with the Ottawa Police Services Board, had been battling a condition called transverse myelitis, a disorder caused by inflammation of the spinal cord and one that can mimic the symptoms of multiple sclerosis.Over a decade, her mobility was gradually reduced to the point that she went from using a cane to an electric wheelchair. She was unable to get out of bed or get to the washroom and, in 2019, moved to a retirement home where she needed support for daily living.

A severe gastro-intestinal blockage landed her in hospital in May. An attempt to give her liquid medicine via a “nasty and uncomfortable” feeding tube earlier this month did not go well, as she has a strong gag reflex.

“That lasted about a day,” she said in an interview from her fifth-floor bed at The Ottawa Hospital’s Civic campus. “I just started screaming, ‘I’m done, I’m done, get it out, I’m done.’”

Because the consensus from two doctors was that the upper-tract blockage — left untreated — would bring about her death in fairly short order, her MAiD, or medically assisted death application, was approved.

Kennedy died in hospital Tuesday, but not before reinforcing her message about the program’s shortcomings.

“I shouldn’t have to wait for someone that I don’t know, didn’t know, and never met, to decide my fate,” she said in a final interview.

“Let it be the patient’s choice. Don’t let a stranger decide.”

Though she worries for her daughter Courtney, 37, and two grandchildren, Kennedy said her strongest reaction to being approved was relief.

“When I heard I was accepted, it was a big sigh and I thanked (the doctor).”

*

Two hours after, Courtney called with the news, pulled over by the side of the road. Her mother went peacefully, in a matter of minutes, before the clock struck noon.

“I’m relieved for her. We had a great last couple of days together and even better final moments.” Lynn’s older sister Gail was also present. That morning, medical staff came by, saying they had learned a good deal about her rare condition, MAiD and the force of one patient’s courage.

The night before, Kennedy received some welcome news. A genetic researcher in the United States said he would be anxious to have spinal cord samples from her, to better study transverse myelitis and help develop treatment options.

It was the first time, Courtney was told, that such a sample would be received by Harvard University’s medical school.“It was a really, really great thing for mom to hear. She always wanted to help somebody or help with something when she went.”Her eyes were also donated. Her mother’s determination to control her own outcome never wavered, Courtney added.

“She absolutely, 100 per cent had no regrets,” she said. “We both said the most perfect things to each other right at the end.”

Among the last things her mother said was “thank you.”

*

Kennedy spoke of the long stretches she has spent in hospital during the last several years, each stay leaving her a little more diminished, the 30 pills she took daily, the loss of independence, the reliance on a call button for basic needs.

“Every time I go in the hospital, I lose something. Every time, and that goes back four years,” she said.After first applying in December, she met all of the MAiD requirements except for the “foreseeable” clause and initially even had a date picked out — Feb. 8 — when her request was denied.

Lynn Kennedy in her apartment in Ottawa Wednesday Feb 5, 2020.

Kennedy went public with her concerns in a story by this newspaper at a time when the federal government was — and still is — proposing changes to the Criminal Code provisions that permit medically assisted death in this country.The revisions were needed after a Quebec Superior Court ruled the “reasonably foreseeable” requirement was a violation of a person’s constitutional rights. The court ordered Parliament to amend the law by July 11.

A spokesman for the Justice department said the COVID-19 pandemic has made it impossible for legislators to meet the deadline and an extension to Dec. 18 has been sought in a court motion. More than 6,700 Canadians have had a medically assisted death since the law came into effect in 2016.Among many changes, the “reasonably foreseeable” section of the law is being rewritten to give patients more control of the timing. The issue of “advanced consent” is also being addressed, in cases where individuals lose mental capacity in the course of their illness.Kennedy, a single mother who admitted to feelings of “cold heartedness” in this seven-month process, said she was not afraid of dying.

“No. Nobody knows where we’re going.”She spent her final days in the company of her daughter and sister and, even in her final hours, never lost her sense of humour. (The food at the General campus, she said, was “gross,” and of her iron-resolve to have an assisted death, she said: “I made two doctors cry today.” No mention, meanwhile, of the grizzled scribbler, wiping something from his eye.)“I’ve been isolating myself for the last year and a half,” she said of tidying up loose ends. “I’m quite content.”We do not doubt her on that point. She had, after all, the final say.

Complete Article HERE!

Goodbye, Grandpa

– An expert guide to talking to kids about death during Covid

By Robyn Silverman

My daughter’s questions started after a family friend got sick with Covid-19.

“If people are sick, they can just give them medicine so they get better, right?” my daughter asked with the hopeful perspective of an 11-year-old. “They can just go to the hospital so the doctors and nurses can help them?”

The questions stemmed from a positive update my husband gave about his martial arts buddy, John R. Cruz, a first responder being treated at Holy Name Medical Center in Teaneck, New Jersey.

He’s one of the lucky ones.

Not everyone is as fortunate. We’ve already surpassed 124,000 Covid-related deaths in the United States and nearly half a million dead worldwide.

For adults, these numbers are shocking. For children, they are unfathomable. Some can’t even conceptualize the notion of a single death.

It’s natural for parents to want to protect children from the feelings of worry and distress we are experiencing during this pandemic, but decades of research underscores that being honest with children is the best way to mitigate feelings of anxiety and confusion during uncertain times.

Even young kids are aware of the changes in the emotional states of adults and will notice the absence of regular caregivers, including grandparents.

So how do we talk to kids about death and dying during the coronavirus crisis? These are tough talks, no doubt about it. Here are six guiding principles, with sample prompts and scripts, to keep in mind.

Assess what’s age-appropriate

While parents should always be honest about death, the information you divulge may differ in amount and depth depending on the developmental age of your child.

How do you know where your child falls? It’s a best practice to follow your children’s lead and answer their questions without volunteering additional details that may overwhelm them. If you don’t know the answer, it’s OK to admit it.

Children between the ages of 4 and 7 years old believe that death is temporary and reversible, punctuated by the fact that their favorite cartoon characters can meet their doom and then come back the next day for another episode.

Even after you explain that “all living things die” and “death is the end of life,” it’s normal for young children to ask, “When can that person can come back?” Be prepared to remind them, kindly and calmly, that “once a body stops working it can’t be fixed” and “once someone dies, that person can’t return.”

Older children grow out of this “magical thinking” as they enter tweenhood, questioning the meaning of death during adolescence, while often seeing themselves as invulnerable to it. They may want to talk with you about why someone has died and need guidance about which resources they can trust for valid information about coronavirus and Covid-related deaths.

Ask your children, whatever their age: “What have you heard about the coronavirus and how someone might get it? What do you know about what happens when someone gets sick from it?” Clarify the difference between the virus and the disease and explain who is at the highest risk for becoming severely ill from Covid-19.

Prepare yourself

A conversation about death, especially when you are reporting on a family member or close friend, is especially difficult. You don’t want to just blurt out the news without carefully considering your words. Give yourself some time to gather your thoughts and take a couple of deep breaths.

Ask yourself: Do I want another supportive adult with me while I deliver this news? Where in my home would be best to discuss this with my child? Should my child have a special toy or comforting blanket with him or her when we have this conversation?

Even though it’s best to discuss what happened with your child before someone else tells them, taking a few minutes to calm yourself down and be present is important for you and for them.

Explain what happened

If someone in your children’s world does pass away from Covid-19, be sure to tell them honestly, kindly, clearly and simply. Experts agree that parents should avoid euphemisms such as “went to sleep,” “we lost her” or “went to a better place” to avoid confusion.

Instead, you might say; “Sweetheart, remember Grandpa got very sick and has been in the hospital for the last few weeks? His lungs stopped working and couldn’t help Grandpa breathe anymore. The nurses and doctors worked so hard to try to make Grandpa’s body healthy again but they couldn’t make Grandpa better. We are so sad and sorry. Grandpa died today.”

Then pause and listen. You may need to repeat your words a second time as distress can make it difficult to digest information.

Give room for the ups and downs of grief

In a time of suffering, it can be difficult to know what to say. Honesty about your own emotions gives children permission to be open about their own confusion, sadness, anger and fear.

You might admit: “This is all so hard to take in, isn’t it? I am feeling sad, and I’m crying because I miss Grandpa.”

Don’t be surprised if some of your child’s feelings come out all at once, while others may peek out days and weeks after the death of a loved one. Be ready for the unexpected and know that, when children grieve, they may be crying one minute and playing the next. This is normal.

“Grief is not a linear process,” said Joe Primo, CEO of Good Grief, in an interview on my podcast, “How to Talk to Kids about Anything.”

Good Grief is a New Jersey-based nonprofit organization that provides healthy-coping skills to children grieving the loss of a family member.

“Grief is like a roller coaster. It’s up, down, all around. For kids and adults alike, every single day is different. And as the grieving person, you have no idea how your day is going to unfold.”

Answer questions

Many children will ask for more information and want to know why their loved ones didn’t survive. Reiterate that your loved one had Covid-19 and the medical team worked very hard but the disease made it so the body could no longer work. You might tell your child about complications such as asthma that made it difficult to breathe even before the coronavirus.

It is also normal for your child to ask if you or others in their life will get sick or die of Covid-19 so be clear about the precautions your family is taking in order to stave off the illness.

“We are doing everything we can to stay healthy. We are washing our hands with soap and water, keeping our home very clean and staying away from others to keep from getting the virus,” you might say.

“We are also wearing masks and gloves when we are at the store to get groceries. And don’t forget, we are continuing to eat nutritious food, exercise and get good rest to keep ourselves strong.”

Provide ways to commemorate and honor

Given that social distancing is making it increasingly difficult, if not impossible, to grieve alongside loved ones as we typically do when someone dies, it’s imperative that we find a way to allow children to say goodbye and remember. Studies have repeatedly found that when children are part of funerals and celebration of life events, they fare better.

“Funerals are about mourning,” Primo noted, “and mourning is a core component of a child adapting to their new norm, expressing their grief, and getting support from their community.” Without these traditional markers, find other ways to honor your loved one.

For example, have a small home-based ceremony and commemorate the person’s life by planting a tree, doing an art project, reading a poem, eulogizing and saying goodbye. You can also collect letters, video tributes and memories from others and share them with your children. Many have used Zoom to remember those who died. Ask your children, “How would you like to honor and remember _______?”

This conversation may be one of the toughest you will have with your kids, and one that, given the numbers, will be part of many families’ reality as we cope with incredible loss from the coronavirus. It’s stressful for everyone involved — for your children and for you, too.

Continue to reach out for the support you need so you and your children can be cared for during this difficult time. Even while we must be socially distant, no one should have to grieve alone.

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